I’m a little confused ( not unusual). A response on another thread suggests that a basal cortisol level of 346 is ‘suboptimal’ and it’s prompted me to ask for clarification.
Is a basal cortisol test the blood test before 0900?
If so, I read that the ‘normal’ range is 102 to 535…so 346 would fall within that as mid range.
My cortisol was 401. Gp is apparently happy with that at 5mg. But I’m still trying to account for overwhelming fatigue, occasional low BP and more, which I attributed to adrenal function still kicking in. I’ve been on 5mg for over 6 months and can’t get below. Is it possible that even with a 401 level, the adrenal function is still not quite right? Thanks; I didn’t want to jump on someone else’s thread but the issues are very similar
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Hulotsholiday
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It can take up to 12 months after you have come off the Pred for your adrenals to be back in full working order...
The 09.00am test is the basal cortisol one, but that only shows that adrenals are capable of working [as you result shows] but not how well.
How are you trying to reduce... and when you say you can't get below 5mg - why precisely? Is it PMR symptoms, or low adrenals or a combination of both?
Very slow taper [like the ones we are always talking about], small drops, 0.5mg at time [some can't manage that and try 0.25mg], time, and patience... lots of patience.
But as you have been here before, perhaps you need a bit more medical advice...
Thanks DL. I did get off pred 18 months ago after a bumpy 6 year journey…Did your very very slow taper and all seemed ok but after about three months, it all kicked in again. Shoulders, neck, hips and arms and couldn’t get up from chair etc. All muscular, bilateral and very different to OA pain. Spoke to GP and I suggested hitting with 15mg then hopefully tapering off quickly. 15 did nothing, but our days at 25mg and everything eased. Dropped to 15, stayed there for a month then started to slowly reduce. At 5mg, I can manage. Any extra stress and it starts to flare, so I try to manage by avoiding stress and pacing. But if I try 4.5, it all kicks in within hours. It’s as if the 5 is just keeping the inflammation under control and it’s not going to tolerate anything lower. GP seems content that I try to manage dosage and I’m blessed with normal ESR and CRP. Last time I saw rheumatology, about 4 years ago, they suggested I’d have to stay on a maintenance dose for life. I’m signed off there and a referral will take 18 months. I’ll plod on and stay calm! Thanks again.
If 5mg is your limit, and you feel good on it, then stick with it.. one day you may be able to get lower, but until that time [and so long as medics aren’t hassling you] then just accept that’s YOUR PMR…
The normal range is 102 to 535 for basal cortisol - so lower is obviously too low. But it isn't just the basal level that is important, it is also the amount made in response to a burst of ACTH in a stress situation. If the basal cortisol is above 450 then it is also assumed there is likely to be enough to deal with stress. If it falls in the range between, then it is advised the synacthen test be done to clarify how well they are working and if they can respond.
The higher level is optimal, best or optimum. so the mid-range is suboptimal. And may not be able to send out more but possibly can,
The fatigue and low BP sounds like the deathly fatigue! I had it around 5mg. I became zombie like, it was an effort to lift my arm to scratch my nose. I also fainted a few times due to low blood pressure.
I thought I was used to the fatigue but the last few months have been a new level. Thought I wasn’t too bad this morning and drove to the shop for a couple of things and suddenly something pulled the energy plug. I had to sit for about 10 minutes then come home and crashed on the sofa for an hour. Feel ok now, but it’s disconcerting not knowing when it’s going to hit and how badly! And I look really well…if people only understood just what’s going on. Every day is an effort but hey ho😀
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